Last year I found out about a research study that is being conducted to gather information about the causes of RS. I contacted the doctor conducting the study but it never really went anywhere. I didn't pursue it but this past week the study has resurfaced. The doctor conducting the study is moving to a new hospital and will be looking for participants. What they would need from us is blood samples from the girls, Brian and myself. They would also want to see her MRI results and paperwork about her condition. I don't love the idea of submitting both girls for blood tests. Brian and I had decided that if her old data would help with research we would submit it but we didn't want her to have to go through any more testing for the sake of research.
But is this selfish? What if one needle stick could help in the future? What if they knew what genetic mutation caused RS? Wouldn't I want to help further this research?
I wish it was an easy answer. The second part of the problem is that the data they are collecting immediately is to first isolate the cause of a syndrome called Gomez-Lopez_Hernandez Syndrom (which is often associate with RS). They will be looking for the cause of GLH Syndrome before the focus on the causes of RS. So any data could be years and years and years away if ever.
What to do, what to do?
I have a son who is 29 years old with RS. We have started the research project too. Unfortunately my ex husband is not overly cooperative. Is the doctor you referred to dr dobyns? If so I heard he is at seattle childrens now. Can you email me his contact info as I want to contact him again and only have his old chicago info. I would be happy to share some of my strategies for anxiety that I use with james as he has lots of issues with anxiety.
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